Month: May 2017

By now you know that I have to take a bunch of pills throughout the day, all of which make me fall asleep.

Waking up in the afternoon is often more difficult than waking up in the morningtime. For example: today. Right now.

Coming out of my midday fog, I find myself in a cool, dark room on a hot, sunny day. I am emerging into a dreamlike reality, watching an obscure Youtube video that all too perfectly mimics my current mental state.

(I am not completely unconvinced that Lhasa de Sela isn’t one of my spirit guides.)

A low camera, never quite focusing on my beloved storyteller, pans the on-looking crowd dressed in scowls, judgmental half-smiles, and dark clothing. Nearing the end of the cameraman’s circle of judges is a photographer. Not looking too unlike myself before all the sun, she smiles more truthfully than the others and is the only one in the crowd who bothers to try to sing along. She manually advances her film. She appears to be shooting with what I swear is a Canon AE-1 , which just so happens to be my first and all-time favorite SLR, trumping even the modern day ultra-uber-DSLR’s.

Some Jesus freak, who first Jesus’d me back in December, stopped me in the hallway this morning (by physically blocking my path to the pool), in order to tell me how much “better” I look. And then, she proceeded to have a great idea: “You should open your own ballet studio!”

Obviously, she has never been a business owner, or worked tirelessly, trying to keep a business afloat. Let alone tried to do it while crippled, in unyielding pain, and on drugs. “Whatever.” I grumbled at her, “You can see that my leg is shaking. I have to get in the water.”

I walked away.

I limped out to the pool deck.

Some overly cheerful aquaciser, full of saccharine and straddling a noodle, yelled out to me “I like your shirt!”

I was wearing whatever shirt I slept in. I looked down: a wrinkled green tee that says “ACHIEVER” on it.

It’s a reference to The Big Lebowski. It’s a reference I knew this lady didn’t get. I scoffed. “Yeah, thanks.”

She then tried to argue that I am not actually in a bad mood every day because I don’t look like I’m always in a bad mood…

I kept walking, but started uncontrollably muttering a bunch of stuff under my breath walking to my deck chair. I probably bore an embarrassing resemblance to Yosemite Sam. “As if I’m supposed to be in a good mood for you” … “Who are you to argue with me about how I feel!?”… “You think I want to come here? That this is fun for me?” … “How dare you judge me based on how you think I look!”

So, what’s a dancer to do when her foot, ankle, and lower leg stop functioning properly? Crying and pouting are certainly always valid options, but they don’t help rebuild someone who has become a partial person.

Dancing has been my identity since I was in preschool. In my tweens, the only disciplinary threat my parents ever gave to me was to “take away” dance. In a seemingly overly dramatic retort, I cried, “I would rather die than stop dancing.” I never stayed out late, I kept up my grades, I did chores, I maintained peace with my brother, I never missed a dance class. Not dancing was not an option. It still isn’t. Despite being crippled by CRPS, I have to maintain the hope that I will eventually find a way to accommodate my limitations.

It occurred to me one day a few months ago, during a brief moment of clarity, that if I could put the insert into a sneaker, maybe I could put the insert into a ballet slipper.

I have roughly 15 ballet technique shoes that all once belonged in matching sets of twos. Over time, they all ended up in a bin, hibernating under my bed. Some have elastic sewn properly and neatly in an X across the arch. Some have no elastic. Some have elastic sewn in a giant loop that I’d cross and bring under the bottom of the shoe. Some have two half sewn elastic pieces that I’d tie in a knot across my ankle. The elastic sewing situation depended solely on how lazy I was at a given point in time.

…and then there is the brace. A friend casually commented to me recently about my “cute black sock.” Well, that “sock” provides a great amount of stability to my ankle.

Take off your shoes and stand on one leg. Go on, do it.

Do you notice how there are lots of tiny adjustments in your foot and ankle as you maintain your balance?

Well, these tiny adjustments do not happen in my right foot. None of those little muscles function on their own. I do countless exercises with my therabands. I have been working on a balance board for over two and a half years. I swim. I ride my bike. I do everything that I am supposed to do. And still. Nothing.

If I want to attempt standing on my right leg, I have to have my body perfectly aligned, and then I just kind of hope I can keep myself upright. The one thing I can rely on: my leg and ankle will give out on me without warning.

So, I wear a brace in an attempt to maintain stability that my ankle does not provide for itself.

…and then I attempt to “dance.” This set up is not comfortable. Nothing about CRPS is comfortable. Then again, nothing about ballet is comfortable either.

I have no interest in comfort because I am (safely, slowly, steadfastly) fighting to keep a promise I made to myself a very long time ago: never give up this fundamentally crucial piece of who I am.

In a good news/bad news situation, I always prefer to hear the bad first. So, this post isn’t necessarily written in chronological order. It’s OK. It doesn’t have to be.

I always try to piggy-back my appointments in New York so that I don’t have to make multiple trips for singular appointments. Luck is usually on my side, but sometimes it just isn’t possible. Over the next five weeks, I have a series of three trips that I have to make for single purposes.

Last Monday was the first trip. A check-up with my neurologist. This is the first check-up I’ve had in nine months where I hadn’t had a nerve block just prior to the appointment. And hey, guess what? I still have CRPS.

I arrived to the appointment about 45 minutes early. Which meant I had to sit and wait. Which my leg hates. So, like a obstinate child, my leg decided to have a full-blown temper tantrum. By the time of my appointment, my leg was in a state of uncontrollable dystonia, making it difficult for my neurologist to fully assess the condition of my condition. But my leg was cold, and a different color, maybe not as swollen, blah, blah, blah. He asked where my worst point of pain was. Under the medial malleolus? Yes. And the center of the top of my ankle. And about two inches above my lateral malleolus on my fibula. And at the top of my fibula. And sometimes behind my knee. “Uh, huh. Yes,” he said, “those are the major nerve junctions…”

My doctor then reviewed the timeline of all of our visits in order to determine my progress, if any. We agreed that the medication and the pain management treatments help reduce some of the CRPS symptoms.

We had a discussion about baclofen. He asked if it made me sleepy. I said yes, but it, combined with the diazapam, actually controls the spasms. He raised his eyebrow as he looked at my shaking leg. I said I didn’t take my dose of baclofen yet because I fall asleep within 10 minutes of taking it. “Ahhh. And so you wanted to be awake for the appointment?” We laughed.

Then he quoted Voltaire. (I know I’ve said it before, but I will say it again. I love my doctors so much. Because they do things like quote Voltaire.)

“The art of medicine consists of amusing the patient while nature cures the disease.”

Yeah. Basically, he said there’s not much that he can do for me at this point beyond refilling my prescriptions. He was frustrated that he isn’t treating me. His frustration is with CRPS and how the disease has a mind of its own. He said that I should keep seeing my pain management doctor and come back to see him for another check up in 3 months.

While trying to fumble my shaking leg into its boot, I asked, “so, is this my life now, for the rest of my life?”

He looked down, he sighed, he looked up, he looked into my eyes. He said, “for now… CRPS takes hold, but at some point, sometimes, usually after many years, it decides to ease up. You first came to me four months after your injury. We were able to treat it early, and that can be promising.”

So yeah…

In other, happier news, on Monday evening, I took another ballet class! This was my second class since my accident almost three years ago. The first was last March, just after I’d had my nerve block. Monday’s class, even though it was the same “absolute beginner” class I’d taken two months ago, was exceptionally more difficult. My leg was not cooperating, and I had trouble standing on the right foot. Releve’s, and most certainly jumps, were out of the question. But who cares. I danced again. Sort of.

Seeing my teacher, interacting with the other students, hearing the brilliant pianist play for us, all helped heal aching pieces of my psyche. My teacher lives close to where I was staying so we rode the train together and were able to catch up. She gave me the best hug I’ve had in a while. I told her when I would be back in town again and that I plan to come to class again.

I was staying relatively close to Rockefeller Center, and I really wanted to see Jeff Koons’s new installation, Seated Ballerina. I walked down Sixth Avenue, past Radio City Music Hall, and wouldn’t you know it? NYU was having their graduation. Apart from the ensuing chaos, it was a pretty spectacular scene. Coincidentally, Columbia’s medical school was also having its graduation on the same day.

Like most dads, my father always knows exactly the right thing to say. Except, my dad always knows exactly the right thing to say to send me into a tailspin. For example:

“You seem to be a little bit grumpy today,” he said.

Grumpy? No shit, Sherlock, but the “little bit” is a little bit wrong. If I were to rank myself on the grumpometer, I’d say, right now, I’m in the Really Fucking Grumpy category. Let’s take a little look at my day and think about why I might not be a chipper little chipmunk, shall we?

I woke up and went to the pool for a swim. Today was the sixth day in a row that I swam. I don’t normally swim on Saturdays, but I have to travel on Monday for a neurologist check up on Tuesday. I didn’t want to be out of the water for four days, so I went.

There was a lot of testosterone in the pool this morning. And I’m not saying that smugly. In fact, normally, it would be a good thing, but I just wanted to take it easy today. The lap lanes were all filled with men (hence testosterone…), all very good swimmers. One guy, a kid really, obviously an actively competitive swimmer, did an hour of IM sprints. It was insane. The other men were all very fast. The water was extra splashy and full of energy. It swept me away. I felt myself going fast. I kept trying to slow myself down. I was definitely not trying to compete at all… I promise… But, I was consistently doing 45 second 50’s, or 1:30 100s, which is, like, an actual athlete goal pace for long swims. I wanted to swim less than 40 minutes, but I got confused on the math (mornings are hard). I got in the water at 9:20, and somehow I thought that if I swam until 10:15, I would swim for 35 minutes.

(Yes, I really am that stupid on these drugs. I have not always been this stupid. I was a fucking chemistry major at University, concentrating in biophysical chemistry, for crying out loud. I can diagram the metabolic pathways of all of these dumb medications I have to take, but I can’t tell time. It’s awesome.)

According to my watch, I swam at full intensity for 53 minutes. I burned 527 calories. That was far too long, and much too high of a calorie burn. I am still 10 pounds underweight, and on my sixth day of exercise, putting in a long swim sets me up for a flare. Furthermore, it is difficult for me to replenish those calories because the drugs make me nauseous and kill my appetite.

My leg spasms lasted a full hour after I finished the swim.

When I came home, I immediately started a load of laundry so I could pack clean clothing for my trip. I always used to say that I hated doing laundry, but I had no idea what the word “hate” truly meant until I had CRPS. Here is how I now do laundry: I load my clothes into a laundry bag. My leg won’t tolerate the extra weight if I tried to carry the laundry, and I am afraid of the bag bumping into my CRPS leg. So I step with my left leg, drag the bag with my left arm while I drag my right leg. All the way across the house. Loading the washer on one leg used to be exceptionally challenging, but now that I am aces on my left leg, it is only moderately difficult. For a fun challenge, you should try it sometime.

While the washer ran, I made myself an everything bagel with butter, egg, and cheese, I felt sick, and I showered (sitting down, because, you know, CRPS). I changed the laundry from the washer to the dryer, again, still, on one leg (if you want a great core and quad workout with some hammy’s and glutes thrown in, try moving your laundry from washer to dryer while only standing on one leg).

Then, the litter box. Scooping the box and replenishing the litter is like, no big deal, right? CRPS raises the difficulty level of every stupid simple thing to a level 10. Don’t believe me? Take the litter box challenge: you have a brand new 25 lb box of litter, and one foot/leg cannot touch the ground at any point in the process. You get bonus execution points if you don’t spill.

And I have a stack of forms to fill out before my final hearing for social security disability (can’t talk about it…). I’ve had the forms for an embarrassing amount of time. Old Me would have focused, finished the forms, and returned them with the next day’s mail. CRPS Me keeps getting distracted. CRPS Me gets confused easily. It took me several days to realize that I am the claimant. Yeah, duh. I’ve been doing a little at a time, and today, I told myself I would finish. No excuses.

But, this means I had to push my afternoon doses back so that I didn’t fall into a 2 hour coma. This has its own implications though. I am supposed to take pills at the exact time every day. My body relies on them now. If I am late, I get fidgety, sweaty, and oh, what’s that you say? Yeah, that’s right. I get grumpy. But, anyway. The papers are now complete. But, just not yet in the envelope.

And back to the laundry. Ugh. I loaded my laundry bag from the dryer, on one leg, and dragged it back across the house. With my right knee resting on my bed, I dumped the bag, folded, and separated the clothes to wear and clothes to pack for my trip to my doctor.

(I complain about my laundry situation now, but it could be worse. It has been worse. At the time when I had my accident, I didn’t have laundry in my building, much less in my dwelling. I took my laundry, on crutches, in the dead of summer, down four flights of stairs, four blocks to a laundromat, and back up four flights of stairs. So, if you think I’m “grumpy” now…)

And all afternoon, it has been thunderstorming. My leg is not friends with thunderstorms. The rain makes my dumb leg feel like it is imploding. The buzzing is louder and more electrifying. My foot feels like a giant sponge that soaked up an ocean of ice water. The skin is feeling crispy fried…

And all of this isn’t necessarily what is making me the grumpiest. The main reason why I am up in a frothy grumpy lather is because I have the cognitive ability to analyze my day. Let’s take out all of the verbose complaints and descriptors. Here’s what I did today:

exercised for less than an hour

ate lunch

changed the litter box

did one load of laundry

filled out one half of one page of a form that was sent to me 4 weeks ago

thought about packing for a two day trip

endured a thunderstorm

It’s 7:00 in the evening, and this is what I have to show for my day. How can I not judge my underwhelming level of productivity? How can I not be angry at my leg for making everything in my life exponentially more difficult? How can I not be angry at myself for somehow allowing my leg to slow me down and hinder me to this extent? How can I pretend to be unaffected by the number of days that have slipped, not to mention the number that will continue to slip, away from me, just as today did?

And then, in the midst of my wallowing self-pitying self-judgment, it is pointed out to me, by my dear old dad, that I am, in fact, grumpy.

Long Promised Road

So hard to answer future’s riddle
When ahead is seeming so far behind
So hard to laugh a child-like giggle
When the tears start to torture my mind
So hard to shed the life of before
To let my soul automatically soar

But I hit hard at the battle that’s confronting me, yeah
Knock down all the roadblocks a-stumbling me
Throw off all the shackles that are binding me down

Sew up the wounds of evolution
And the now starts to get in my way
So what if life’s a revelation
If the mind speaks of only today
So real, the pain of growing in soul
Of climbing up to reality’s goal

But I hit hard at the battle that’s confronting me, yeah
Knock down all the roadblocks a-stumbling me
Throw off all the shackles that are binding me down

Long promised road
Trail starts at dawn
Carries on to the season’s ending
Long promised road
Flows to the source, gentle force, never ending, never ending

So hard to lift the jewelled sceptre
When the weight turns a smile to a frown
So hard to drink of passion nectar
When the taste of life’s holding me down
So hard to plant the seed of reform
To set my sights on defeating the storm

But I hit hard at the battle that’s confronting me, yeah
Knock down all the roadblocks a-stumbling me
Throw off all the shackles that are binding me down

I was talking to a friend on the phone the other night, describing some CRPS nonsense or another, and I said, “I don’t have a leg to stand on.”

He paused, gurgled back a chuckle because whatever I was talking about was, in fact, not anything to laugh at, he paused again, and asked, “uhm, did you just intensionally make a leg pun?”

Of course I did. I do it all the time. Leg and nerve puns are great. “Shake a leg,” “I’m on my last leg,” “this is fraying my nerves.” I could go on. But I won’t.

Puns, along with dry (arid, extra-dry) sarcasm, help me tolerate it all. I guess you could say that I have a penchant for finding humor in situations that are exceptionally not at all funny.

My friend commended my ability to make light of my overwhelming circumstances. Pretty soon, we were both laughing a little too hard about CRPS and the ridiculous overarching shitstorm that I call my life. He told me that I could (should, really) make up a stand-up comedy routine.

“Yeah, except for one small detail: I can’t actually stand up.”

Right. Of course. So I’d have to find a way to deliver the routine from my bed.

So I gave it a little (very little) thought: my lay-down comedy routine would probably be some bizarre hybrid between Disney’s Bedknobs and Broomsticks

and a much less thrashy, much less maturbatory rendition of Madonna’s Like a Virgin performance from her Blond Ambition tour.

(Preface: I have a bad attitude about people who force their religious beliefs upon me. I have a bad attitude about their rudeness, righteousness, and arrogance, not their religion. I have my beliefs that are just as firmly rooted and just as true to me as anyone else’s are to them. I take issue with the assumption that they are “right” and whatever I believe is either the same as them or “wrong.” My religion is deeply personal and is probably not the same as yours.)

Basically. Praying. I don’t get it. Hear me out.

If I get what I want, then Jesus, or some derivative of a god-like creature governing the Universe, is good and loves me. If not, it is because the Almighty Masterful Force wants to teach me a lesson.

If the Great Master Of All There Is And Ever Was already knows what is “in my heart,” then doesn’t He already hear my cries, my pleas, my desperation in every time I yelp or cry or say (uncontrollably, aloud), “Jesus Christ, my fucking leg…“? Do I really need a holy hotline?

Oh, right blasphemy. It’s bad. My bad. Sorry.

I admit it. I am very sarcastic about praying. Specifically, I find the notion of praying for something I want ridiculous. It seems all too reminiscent of Christmas, 1983 when I really, really, really wanted Santa Claus to bring me a Cabbage Patch Kid. I wanted her with all of my heart. I felt like I would die if I didn’t have her. And now, is wanting my shaking leg to stop, wanting the pain to stop, wanting to work again, wanting to go out with friends for a beer or coffee or milkshakes, wanting my suffering to end, is any of it any different than that Cabbage Patch Kid? It’s all just stuff that I want, and want with great desperation.

God isn’t Santa Claus.

(Although, I know some people who would argue that the ideas are one and the same. Santa was an invention to reign power over children to force good behavior, and some people theorize that the notion of gods and God reign power over and placate The People to maintain order of the masses. This is a topic for debate on someone else’s blog…)

Anyway. Everyone struggles. Everyone suffers. Welcome to what it’s like to be a human being on the planet Earth. CRPS is the very worst kind of bullshit fuckery, definitely, for sure. But, when I stop to think about it, truly, in the grand scheme of my life, all of these endless days of endless suffering make me so incredibly grateful for all of the very, very good days I’ve had in my life. I would be petulant and childish if I felt anything but gratitude for the opportunities that I’ve had. I won’t cry about the unfairness of my life or question, much less place blame upon, some unprovable being. As bad as this is, it could be worse. I know it could be much, much worse. Beneath my hatred of every second of this, lies gratitude. Sometimes you don’t deserve what you get, other times you get what you don’t deserve (and how cruel to believe in an idea of some puppet master tallying up the score…).

(My attitude isn’t just toward “Christians;” I don’t want you to get the wrong idea. I don’t discriminate. I’ve turned down Reiki “experts” for similar reasons. Pretty much, I don’t want to be physically touched by strangers, I don’t want to call any more attention to myself or to my leg than it already commands, and I will not pander to the whims of someone who, despite knowing nothing of me or my disease, thinks they hold the secret resolution to all of my troubles.)

The truth is that I am in a helpless situation. People feel powerless and perhaps feel like prayer is the only possible thing that they can do to help. I understand. It’s an act of kindness. I appreciate it.

So, if you feel like praying for me will make you feel like you are helping, by all means, do it. You may pray privately and quietly for me to any religious/spiritual force you believe in. And if you happen to pray to a Santa-like god who grants wishes, I will tell you what I want or what think I need in my life (but please don’t ask me to sit on your lap).

I really don’t need any further prayers for my leg.

(Jesus knows about my leg. If he didn’t oversee my accident, and every bit of the subsequent aftermath, he has received emails, direct messages, and prayers from every sect and denomination of Christianity. Allah also knows about my leg– It’s true. I have several Muslim friends, and I befriended a very sweet Egyptian couple on a plane last year– Jews pray for me. I’ve had rocks stacked and crystals rubbed for me. I’ve thought about pure white healing light. Someone even supposedly cleansed my aura. I am now quite confident that every supposed governing energy force in the Universe, every god, and God know about my leg.)

What I need are good, trustworthy people to stay permanently in my life, providing deep emotional support, light-hearted laughter, and an occasional hug. I need resolution with respect to certain legal situations that I’m not currently allowed to talk about, and if those resolutions could be in my favor, that would be very helpful. Those are my two wishes, I’ll donate the third wish to you.